Down Syndrome

Music and lyrics

~ Vickywoo ~ Leave a comment

Audrey first heard music (outside of the womb) in the arms of her daddy whilst mummy took a shower. We were in the room on the baby unit, where we had to spend the night to see how we got on with Audrey. A sort of transitional home from home, with nurses checking her over and weighing her (oh that obsession with her weight! So glad it’s over). We would not be allowed home unless she gained weight!

I entered the bedroom to be greeted by The Supremes singing “Baby Love”, Ted cradling Audrey in tears. She was 3 weeks old and looked like a music fan already. It was a bit of a turning point as she was no longer on the ward and seemed more like “ours”, plus a reaction to music made her that more… normal. I know that might sound ridiculous, but when your head is full of “difficulties” and “special needs”, it makes you think things won’t ever be “normal” and you worry what sort of interaction you might get from your little one. Of course I know now that those worries were pointless, but every little moment like this one served to teach me that.

We have played Audrey a lot of music since then, everything from The Beastie Boys to Blur to opera. She likes a good beat and from around 13/14 months she started dancing (rocking back and forth whilst sitting), which is amazing.

Of course Audrey loves the irritating music from a tacky, bright, light-up toy too and is getting quite adept at bashing the right places to get the music going!

Thankfully she is just as happy to listen to music we like, especially when we sing along and dance around the room. In fact, I’ve had several of those funny lyric-realisation moments that have led to tears… You know when you’re a teenager and suddenly you understand what the love songs are about? (Imagine me, 90s teen, ‘Again’ by Janet Jackson on repeat…). Well you get to experience that revelation again after having a baby.

When Stevie Wonder (one of my favourites), sings “Isn’t she lovely, made from love” I get such a warm, positive feeling. “Made from love” just gets me every time. It sums up making Audrey.

I’m also a Justin Timberlake fan and although I’m aware ‘Mirrors’ is about his wife, there was a sudden point listening to the lyrics that really struck me and now it has become an Audrey song…

I’m lookin’ right at the other half of me,
The vacancy that sat in my heart,
Is a space that you now hold.
Show me how to fight for now,
And I’ll tell you, baby it was easy
Comin’ back here to you once I figured it out,
You were right here all along.

It reminds me of when we reminisced about Audrey’s scan picture (she was pouting or sticking out her tongue) and the fact that she was such an active, kicky baby. There we were, looking at her a few weeks old, little tongue sticking out, as she kicked her legs… And then we realised there was no need to mourn the baby we thought was there – it was Audrey all along!

Here’s that cheeky tongue:

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Upsetting news

~ Vickywoo ~ Leave a comment

I mentioned a few posts back that I was in touch with a woman who had prenatal screening that advised 99% that the foetus had Down’s Syndrome. I couldn’t offer her the perspective of someone who knew they were carrying a child with special needs, so I put her in touch with someone who could. Today we found out that she decided to terminate.

I am NOT saying she shouldn’t have terminated or that our input should have made her want to keep the baby, I’m just saddened that it’s so scary to have a child with special needs that there’s a way to opt out. I’m saddened that this is the norm. 92% of women who receive a prenatal diagnosis of DS, terminate and whilst I don’t know what it’s like to receive the news whilst pregnant, I do know what it’s like to feel like the diagnosis is the worst thing in the world and soon find out it’s not.

In this particular case, the woman in question met with several families, spoke to/emailed others… so she probably had more information than most before making the decision. I guess that’s really why I find the news so upsetting; even with support and positivity from the Down’s Syndrome community; she still felt she couldn’t keep the baby.

Whilst I know the decision wouldn’t have been taken lightly and I think she was very brave to contact DS families to help her and her partner make the choice, it still feels like we all failed to convince her it would be ok in the end.

This experience has made me more determined than ever to raise awareness and get people falling in love with Audrey. I hope our family can be a source of comfort, inspiration and hope for anyone wondering what life with a baby with DS is like.

Down’s Syndrome Awareness Month approaching…

~ Vickywoo ~ Leave a comment

When Audrey was born I wasted too much time worrying about the most ridiculous superficial nonsense! I thought about things like her not having any fashion sense! That she might be fat! That mother-daughter time would never be how I had once dreamed… I’m so ashamed by these thoughts.

One of the worst/craziest worries was that I would never think she was beautiful. Here we are at 14 months, she’s 100% the most beautiful baby I have ever seen. It should be a given that a mother would feel that way about her child.

I suspect my blog posts will get a bit repetitive, I apologise in advance! But I’ve realised the importance/benefit of “raising awareness”. If people were more aware and if disabilities were a part of everyday life, those of us suddenly thrust into this world might not feel so awful/negative about it.

October is Down’s Syndrome Awareness Month.

In October 2012 I fell pregnant with Audrey. In October 2013 she was 3 months old. Thanks to Instagram I found out about DSAM and found all the DS hashtags that led to me to become part of a community of wonderful people enjoying life and sharing their DS experiences. Seeing happy families from around the word really did make a difference to me. It has given me hope, support and also the confidence to share our story and share Audrey with the world.

Back in October 2013 I had around 80 followers on IG, a year on I (Audrey!) have 720!

I must admit, my first thoughts about Down’s Syndrome awareness was; “I’m aware of it, as are most people, not really sure why we need to increase awareness”. Ha. But gradually I realised what the “awareness” was doing for me and how much strength you can gain from seeing other people go through what you’ve been through and come out the other side.

And then I think about awareness and inclusion and what that can do for the world. If TV and adverts and mainstream media embraced special needs, disabled people, minorities… Maybe we’d all feel more comfortable around people who are “different” to the norm. Maybe we’d all feel less scared by “different”. And maybe a woman somewhere getting told her baby has DS won’t immediately feel the future has been destroyed, but will think “Oh, ok, unexpected, but people with DS lead happy and fulfilled lives, things are going to be ok”.

Audrey in October 2013…

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And now (Sept 2014)…

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Getting home

~ Vickywoo ~ Leave a comment

Audrey was in the baby unit for 3 weeks, as I type that now it sounds like no time at all, but back in July 2013 it felt like forever.

I was in hospital for 6 nights after the c-section, shuffling up from floor 12 to floor 14 to breastfeed Audrey. We then spent a week or so commuting in on the bus to our “part-time” baby. It was definitely not the start we imagined.

Audrey was allowed home with oxygen, so she had to wear a cannula and be plugged into a machine in our hallway or to a travel canister whilst out and about.

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It felt like such a huge burden to have that tube on her face… Especially as the weeks passed and the sleep studies showed she still needed it. But again, I can look back now and feel relieved that we only had to deal with it for 6 months, such a short space of time in the scheme of things. There’s still a chance she will need it again in the future, but for now we are so happy to have her free of tubes and plasters!

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Audrey’s story begins…

~ Vickywoo ~ 3 Comments

The story of Audrey begins sometime in the 1990s when Mummy (Vix) and Daddy (Ted) first met… but let’s fast forward to 2006… Vix and Ted get together… fast forward to 2012… Vix and Ted get married… then November 2012… when a stick finally confirmed a baby on the way…

From that moment we were in love with our baby and planning his/her future. The holidays we would take, the music we’d dance too, the games we’d play… then the adult child; college, university, their profession, their wedding, the grandchildren… pregnancy was all about the excitement of what was to come!

Being pregnant was pretty fun for me, the cravings were ice cream, yoghurt, milkshakes, coconut… the baby was a real kicker which was a lovely way to stay connected and feel reassured. We took hypnobirthing classes and I had wonderful naps to the relaxation CD. Aside from a little bleeding early on, regular heartburn and some swollen feet, it was a pretty easy pregnancy and I found the whole experience enjoyable.

Monday 22nd July, 5 days past our due date, I was still very relaxed and convinced the baby would eventually be induced. It was ‘royal baby day’ (Kate was in labour) and there were a few texts and messages asking me if I’d had any twinges and of course I told everyone there was no way we’d get our silver penny… not an inkling of labour in sight…
It was crazy hot and I walked into town in a long summer dress to pick up supplies (pineapple to bring on labour, my favourite iced spiced buns from M&S…). I bought new socks for Ted so he could finally throw out odd and hole-ridden ones. I was mildly concerned that baby hadn’t been as active as normal, but decided I was probably over-reacting. I had lunch. Still no kicks. I read online how to encourage movement… drank some ice water, ate some chocolate. No kicks. I watched some Gossip Girl, tried to relax… but all I could think was “I do not remember this baby kicking today”. By now it was about 3pm and I decided the relaxation CD (for hypnobirthing) was my best bet… baby always kicked just as I was trying to relax/fall asleep! The CD finished, I woke up and yet again… no kicks. Between telling myself the baby probably kicked at some point without me noticing and crying because I was sure that couldn’t have happened… it got to 5pm and I called my husband. Of course he was calm and told me I should call the hospital and see if my friend Becs was free to go with me, he would make his way there asap…
Even with the tears and the worrying, I still expected to be checked over, told all was fine and be sent home, I remember Becs and I were in a taxi just after 6pm, we were taken into a room on the labour ward triage and two midwives rigged me up to the monitor… the baby’s heart beat was there! Hurrah! All my concerns fell away…Then the midwife said there were dips and that the baby was possibly reacting to some braxton hicks (tightenings), but it was also possible the cord was being affected and I was asked to lie on my side facing the wall. I felt silly as Becs was sat in a chair and I couldn’t see her. I kept waving at her and saying “thanks for coming!” – still thinking it was no big deal. A doctor came in and calmly explained that the baby was in distress and they would be checking to see if I was in labour and would try to break my waters… Just as this news was delivered Ted arrived expecting a scene of “all ok, go home”, but finding instead our baby was going to be on the way one way or another that evening! Once it was apparent I wasn’t in labour, I was told they would like to proceed to emergency c-section and I’m proud to say my husband asked for a minute alone with me to discuss this decision. He knew c-section was something I dreaded. I cried, filled with panic and that stupid feeling that a non-natural birth was a failure… We asked the doctor if we had any other option… We didn’t. And so I just went with it, if the baby is in distress and needs to get out, then so be it. I still feel so strange that at 6pm I was in a taxi with my bump and by 7pm I was being prepped for surgery.

Our baby was born at 7.51pm – it was all so quick. Baby was delivered and I heard no cries which was the first alarm bell. Ted told me it was a girl and I welled up a little as I was so convinced we were having a boy. He was first to hold her, she was wrapped in a towel and I could just see her eyes peeking out – I knew then she had DS. I kept asking Ted to show her to me – I couldn’t see enough of her face…
I said “She looks like a little monkey!” And they prepped for skin on skin… She was laid on my chest. I could see her clearly now and I just thought “this baby has Down’s Syndrome”. So I quietly said it to Ted. I remember hearing him say “Er excuse me, but my wife thinks the baby has Down’s Syndrome…” And they took him to the side to explain the signs were there, but they couldn’t confirm either way without a test.

It was like an out of body experience, I was removing myself from the situation, from the baby, “this baby has Down’s Syndrome…” as if they’d given me the wrong baby. She was rushed to the baby unit, I was taken into the recovery room. We were apart for hours. I can’t say how many, it’s a bit of a blur, but when I was wheeled up to visit her I still felt so confused and so numb.

And so like many who have a baby with DS, a joyous occasion was filled with confusion, worry and upset. If only we’d known… But you could never get someone at that stage to understand that no matter what, you will love your baby. Your baby will be perfect to you, no matter what health issues or differences to typical babies he/she may have.

24 hours after our beautiful Audrey Emily was born, I was taken up to the unit to breastfeed her. This was a moment that made me truly realise I had a baby and I needed to be there for her. I honestly believe that 50% (maybe even more) of the weirdness was due to the c-section, it wasn’t all Down’s Syndrome “upset”, but regardless, at that moment I felt much more connected to our little Audrey.

Something you can never expect to know… A baby with DS is still a baby. Still a joy, still your baby to be loved. There is a lot to take on board (health worries, a different path…), but aside from that, the baby will reward you with the same love and smiles you’d get from a “typical” baby.

More to come, can’t believe I’ve finally written the “birth story”, it’s taken 7 and a half months… But Audrey does keep me occupied!

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